autism awareness month

Parents of children with autism can have unique challenges in diagnosing and treating their children’s hearing loss. For Autism Awareness Month, blogger Jen B. from Oregon, U.S. has written about her 3-year-old son Xander’s hearing journey, from difficult diagnoses to helping him learn to wear his new sound processor.

He will turn on a dime if he hears his favourite theme song start up. He’ll sing along in perfect pitch. And yet, dogs barking right next to him never make him flinch.

My son was born three weeks early with a collapsed lung and rapidly dropping sugars. Very soon he was transferred to a hospital with a Neonatal Intensive Care Unit (NICU). When I first saw him it was obvious that there was a slight deformity of his right ear. I assumed he had lain on it wrong in utero, and that it would work itself out.

The hospital gave Xander a hearing screening, as was standard procedure for all NICU babies. The nurse came in while he was asleep on me and checked his left ear first, because that’s always, even now, the ear he has to have facing out while snuggling.

Everything was fine.

The nurse tried twice to check his right ear and still seemed perplexed, because she couldn’t get the readings she was used to. Ultimately, she marked it as a pass.

It was only later we learned Xander’s hearing wasn’t normal.

My son has Autism Spectrum Disorder. He was diagnosed at only 18 months old. He is now 3 years old and considered non-verbal. He speaks, but not necessarily with what professionals would call, “purpose.”

Autism affects all forms of communication. Where a neurotypical child with a hearing loss might pull at their ear, say they can’t hear, or make some sort of gesture – something — we got nothing. It gradually became clear he needed to have his hearing assessed.

At about 2 years old Xander finally saw an audiologist. Autism can make a child both seek out stimulations (sensory seeking) and feel overwhelmed by them (sensory overload), so diagnosing hearing loss can be a challenge. In a room with all sorts of things making noise and lighting up, Xander wasn’t very cooperative. His tubes were clear, but the audiologist scheduled him for a sedated Auditory Brainstem Response (ABR) hearing screening. All the worst-case scenarios came into my mind during the scan, which felt agonisingly long.

The doctors learned Xander had conductive hearing loss in his right ear, and to learn more he would need a CT scan of his temporal bone. The doctors decided further diagnosis was not urgent and told me things like, “just speak to him on the left side” and, “in cars he probably won’t be able to hear you.”

About six months later Xander need an MRI for another issue, so we decided to have the CT scan done at the same time while he was sedated. We learned he is missing the third stapes, or stirrup – one of the bones of the ear – on his right side, a rare condition.

There is a surgery to implant a prosthetic stapes, but Xander’s major facial nerve runs where the bone should be, making the operation too risky. We decided instead to treat Xander’s hearing loss through bone conduction.

The sensory sensitivity caused by Xander’s autism made it hard for him to wear his first sound processor. The constant vibration against his head, the increase in noise and the strap around his head were difficult for him to tolerate. I would try bribing him, like I do with his glasses. “If you put it on, you can have a candy.” It didn’t help much.

When Xander’s trial was over, he received his Cochlear Baha 5 Sound Processor, and we both loved the way it looked. When I pointed out how cool he looked wearing it on his Softband, he beamed with pride and wore it for several days, for long stretches at a time – even to school!

Believe me when I tell you that I cried when I said, “Xander!” and he looked up at me.

He was able to hear the start of his favourite show in the whole world. He was mesmerized. He had never noticed all the nuances of it before he got his Baha processor. He could understand enunciations. He could hear his electronic toys, the ones that had never interested him before. A whole world opened up to him.

But for a child with autism, that can be really intimidating.

After an accident left him injured, Xander has become even more sensitive to stimulation, and sometimes getting him to wear his sound processor is nearly impossible.

Well, every day is a different day in the world of autism. While trying to take a photo of him wearing his sound processor, I was able to capture a whole video. He let it stay on while cruising around a department store today. I was so excited, and I hope tomorrow he’ll leave it on even longer.

For children with autism like Xander, treating hearing loss might not be a linear journey, but each day brings new opportunities for him to listen to his teacher at school, his toys, and even respond when I call him, “Xander.”

The opinions expressed in this blog are my own views and not those of Cochlear.

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